F had a follow-up appointment with his primary care doctor. I'm really starting to like his doctor. I still miss his pediatrician Dr. Faro. She was amazing, but Dr. Lee is really starting to grow on me more and more. First, I love how he addresses F. He speaks to him directly even though he may not always get a response form F. I think F can be intimidated sometimes bydoctors. Doctor's tend to make judgments about his level of intellect. So F may go into his "safe" mode and that is sit quietly, don't make eye contact. Another thing about F, he is thoughtful and introspective. He tends to absorb and process information slowly before making any decision (I wish I had this quality). We constantly have to verify that he "wants to think about it" and ask again later.
I'm getting off track about how Caroline saved the day. At the ER when they were running labs for Forrest I heard Caroline's voice in my head "repeat the chemistry panel, waiting a month might be too long" so I made the request. Thank goodness she planted that seed. His potassium was slightly below normal 3.2 (3.5 to 5.0 normal range). I had made a follow-up appointment with his doctor after the urgent care visit Saturday night. Then we end up in the ER on Tuesday night. In speaking with Caroline about, "Should I cancel primary if we get into ENT?" She said "you need that appointment with primary care to discuss his potassium." Her theory has been that due to his bowel care routine (he has a cecostomy tube) he's being depleted of valuable electrolytes. Thank goodness she reminded me. I was over focussed on the abscess.
Here's background info on the potassium:
F spent a week on potassium supplements after being a 3.0 after a chem panel when he was sick with fever/cough the few days after the Super Bowl. Again, due to Caroline planting the seed that when he's sick and on that Modified Atkins neurology needs to be contacted because he's blowing ketones. I can't really wrap my head around the "blowing off ketones" concept, but I've learned not to doubt her. I contacted neurology and they ordered labs to check his ketones and his chemistry. I had also made the appointment with another doctor at the office for an evaluation. I like them to get a baseline in case he takes a turn for sicker. He's susceptible to pneumonia because he's immobile, has asthma, and his lungs aren't that great. They did a chest x-ray (it had been over two years since his last!!!!) which was clear.
Later in the morning Janet, from neurology, calls about his potassium. "His potassium is low, please let his primary doctor know so that he can supplement if he needs it." Thank you, Caroline! I wouldn't have called neurology it simply wasn't on my radar. Labs wouldn't have been done low potassium not discovered.
Back to today's visit at the doctor today. He looks at the abscess and it doesn't think it needs further lancing. We are directed to continue with hot compresses and maybe the remainder will drain, but relieving the pressure and some of the pus has clearly allowed the antibiotic to do it's job. So far the cultures are coming back for staph. No shock there. He does want us to get into ENT so that they can excise the cyst, but he states he suspects F is susceptible to them and it could happen again. Bummer :(
Then onto the potassium discussion.
Dr. asks, "Does he have diarrhea often?"
I respond, "No, just his bowel care routine which includes this solution 1100 cc water, 1.5 teaspoons of salt, 10 cc milk of mag, and 40 cc of castile soap."
Caroline says, "You are inducing diarrhea."
Snap to reality! Connection made. I finally get it. I've been wondering why bowel care affects his electrolytes so much. Thinking it all has to do with the salt. When in all reality it's the fact that we induce diarrhea for several hours. Then we do it again in a couple of days. This is part of his care. It's worthy to note that Caroline has been working the electrolyte issue with me since she's been here. I just wasn't getting it until today.
F has had that cecostomy tube since he was around 8 years old. We used to do bowel care every day for years. He'd be so sick afterwards. Upon reflection I realize that he wasn't just sick he was dehydrated and his electrolytes were off. We'd give gatorade and other electrolyte drinks to help with the extreme nausea afterwards wanting to prevent dehydration, not even realizing we induced it. We never made the connection to the nausea and electrolyte imbalance to what the solution did to his body. It also aggravates his seizures. Which of course makes sense.
Caroline finally worded things in a way that connected all the dots. She really just needed to dumb it down for me at that moment. She was also the first person to notice a connection with his seizures the following day after bowel care. I am so grateful. I look at how his seizures have improved so much with the diet. Perhaps adding potassium to his routine will help even more. I am so thankful for her knowledge in so many areas. I've learned so much from her.
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